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Corella
12-14-2012, 07:34 AM
I am on my 11th week of 10mgs of Methotrexate, today I went on to injections - and have the bruise in my stomach to prove it (now bruising easily). All my bloods are fine, I am on a low fat diet and have totally given up alcohol since starting on the drug.

Can I ask at what point if I was going to lose my hair would I lose it - nothing so far, in fact it is doing rather well. The only effects I am having from the meds are tiredness and my periods have stopped.

Is it after months you lose your hair or do some people not lose it? Prednisolone makes my hair grow heaps and I have a mop of hair when I am on the preds, just wondering if it is a foregone conclusion Ill lose my hair on the MTX?

Thanks in advance.

tgal
12-14-2012, 08:53 AM
The majority of people don't lose hair at that dose. You are most likely good

SleepyInSeattle
12-14-2012, 09:03 AM
I lost a lot over a span of about 6 months, but I am on 25mg/week, which is a lot more. You may not have hair loss at all! :-)
I would mention the stopped periods to your doc, though - that concerns me a bit.
Are you taking folic acid to mitigate the side effects?

Mica
12-14-2012, 11:06 AM
I lost my hair, but it didn't happen gradually one day when I took a shower like a fourth of it fell out and then it started to gradually fall out. I was taking the folic acid too but that was me and it sounds like your hair is doing pretty good though. When I look back on it now my hair started to break off and get weaker before it fell out and I was on a much higher dosage than you are.

Corella
12-14-2012, 04:19 PM
I lost a lot over a span of about 6 months, but I am on 25mg/week, which is a lot more. You may not have hair loss at all! :-)
I would mention the stopped periods to your doc, though - that concerns me a bit.
Are you taking folic acid to mitigate the side effects?

He hasnt put me on folic acid - said I dont need it - the tiredness has more or less gone and I havent had any nausea since yesterdays injection. Not sure why he hasnt put me on the FA though, and I am not sure how to ask him for it if he doesnt think I need it (if that makes sense)

I had a panic moment yesterday, I saw the words 'cytotoxic' on my MTX bottles and it suddenly hit me what toxic drugs I am taking and I panicked and I am bruising more easily - steroids as well I am thinking.

The drugs are working, I am not immune suppressed yet though, my body is still 'fighting' it but it scares me that I need such stuff in order to function. My lower back hurts today, I am only on 5mgs of Preds but today my bones are a bit sore - think I overdid it yesterday. I cannot believe that this Sjogrens has made me so sick, I only tested positive by my eyes, CRP and ANA - nothing else but my consultant said it is a good indication that the plaquenil, steroids and MTX are helping that this is Sjogrens, he mentioned the possibility of a lupus overlap although never said anything since.

Today I feel really scared, I think the injection has brought the reality of it to me - does that make sense? Do any of you get scared?

SleepyInSeattle
12-14-2012, 06:22 PM
Heck yeah.

I try not to think about it too much, because with good treatment, day-to-day right now I feel okay (knock on wood!). I try to enjoy the health I have instead of dwelling on the bad stuff that might happen in the future. And, of course, I try to take good care of myself.

The toxicity of the drugs is a weird thing to deal with, mentally. Last appointment, I told my doctor "I can't believe that taking poison could make me feel so much better"....I guess it means that my body is really out of whack, and needs something pretty dramatic to balance it. But as long as it is making me feel better and stronger, I am trying to trust that it is good for me, in a weird way. And I have to trust that the tests my doc does every 3 months will monitor for anything bad happening - liver toxicity, retina toxicity, disease activity, kidney involvement, etc (I have Lupus as well as Sjs, but the treatment is the same for both so I guess it doesn't really matter).

I have been off my Mtx for the last month because I had a UTI and was on antibiotics for 10 days, then got my flu shot, then got a virus for a week. I have an appointment with my Rheum on Tuesday anyway, so he said hold off on it until then - we should do blood work and see if things have changed, and maybe consider a lower dose, and/or assess if it is really necessary. I still feel pretty good, but I do feel like the Lupus and Sjs is kind of creeping in the longer I am off the Mtx. I have more achiness, definitely more brain fog, and I am more tired at the end of the day. So it seems like I do need it - just maybe not the full 25mg/week I was on before.

I dunno. The only information we really have to go on is the lab work and of course our own feelings about it. It's easy to be so afraid of the known toxicity of the drug that you can overlook the unknown damage from the diseases....especially when you are on the drugs and they are making you feel better so you forget how awful the diseases are. But it is scary how they can come roaring back without those "toxic" drugs keeping them at bay.

I guess "toxicity" is relative - for most of us, the "toxicity" of the diseases are far more harmful than that of the drugs.

But only you and your doctor can find the balance that maximizes the benefits and minimizes the risks for your particular case.

It's a long game, not a short one - and the rules can change on a dime. It's tough, coming to grips with that reality.

steve.b
12-16-2012, 06:17 AM
He hasnt put me on folic acid - said I dont need it - ......Today I feel really scared, I think the injection has brought the reality of it to me - does that make sense? Do any of you get scared?

i have found quite a few doctors do not understand the need for folic acid.
in australia, you can buy it over the counter, without a script.

the reccomended dosage is 1 x 5mg tablet any day except mtx day.
and definetally take it the day after mtx.

the drug poisoning thing was very hard for me to get around too.
but i have been able to balance it with the knowledge of how it has slowed the progress of my problems.
plus we eat so much food that has been modified or overproccessed anyway.

time is a good healer for inabitions.
familiarity does truely build contempt.
the longer we accept it..... the easier it is to take it.

Corella
12-17-2012, 03:25 AM
Spoke to specialist today, he thinks my hair loss is disease activity as I havent been on the MTX for long enough and reckons the dose is a low one to cause the hair loss I am getting. He also said the hair loss is more common with Lupus and RA, but occasionally get it with Sjogrens. He has told me to take 5mg once a week of folic acid.

On a plus result, my bloods are looking good - glad I have given up alcohol though, would be too scared to even touch a drop on these meds.

Nonna
12-17-2012, 04:20 AM
That's what I was going to say. Hair loss is part of the disease. I'd also check with a gynocologist concerning the periods. That could also be a sign of disease activity.

Hugs and Good thoughts

Corella
12-17-2012, 06:57 AM
I dont have a gyno - never needed one but my Rheumy wants me to go to my GP and get my hormones checked, I just assumed it was menopause as I am 45, although dont think I am being silly, we girls tend to know what is going on in that department and whilst I think the menopause is a normal life stage (which it is as we all know), this sort of feels very odd and not normal. That sounds daft and I cant explain it very well but I am sure some of you know what I mean.

Corella
12-20-2012, 04:00 PM
I am so upset, last night I was on the phone to Dad on Facetime so he could see me and I ran my fingers through my hair and it was just break off and falling out, Dad got upset and so did I and then I showed my husband and he got upset - one big pile of upset-ness.

My Rheumy said 11 weeks is too soon to blame the MTX and I am only on 10mgs as I previously posted. I have started my Folic acid - 5mgs per week and I am already on Biotin and I am on 4000mg of omega fish oils a day for joints and eyes.

Can I ask you guys if you discovered the MTX was responsible for your hair loss and the drug was helping everywhere else, would that affect your judgement and stop taking it?

And can I ask, have any of you ever had a 'gut feeling' that something is going on in your body? I have a feeling that my Sjogrens is not 'alone' and my Rheumy said that hair loss is more common with lupus and RA than it is with Sjogrens, you can still get hair loss with Sjogrens but it isnt that common and he has mentioned lupus overlap before but the bloods dont support it.

My sun sensitivity is so severe now, even five mins in the sun sends my heart racing. When I wake up in the morning I am so stiff it takes me an hour to loosen up, not sore but stiff and I wake up feeling dizzy as well.

I think I am in for a rough summer in Oz to be honest and I have heaps of hair but now it is falling out I am so scared. The MTX is helping though, I have more saliva than I did.

Just having a bad day where you realise that your disease is a hostile and annoying 'lodger' that you cannot get rid of.

And it scares me.

SleepyInSeattle
12-20-2012, 07:45 PM
Well, I would listen to your doc about the Mtx. I don't know.

I have been on 25mg Mtx/week and I was definitely losing hair by 11 weeks - but again, it was a much larger dose. And yes, it does make my hair very brittle, as well as making a lot of it fall out form the roots. It's very frustrating. (I'd say I'm tearing my hair out, but that's not really funny in this case, nor can I afford to do it!...) ;-}

In my case, I have autoimmune hearing loss...I am almost totally deaf in one ear (this happened very suddenly last April), so for me the choice is lose my hair or lose my hearing. I'm choosing to give up on the hair! So even if I went totally bald, I'd keep up the Mtx. It also does make me feel almost totally normal - no more fatigue, achiness, brain fog, etc....it's wonderful. It is worth the side effects so far.

I have Lupus, Sjogrens (secondary to the Lupus), APS, and Raynauds - and that combination really predisposes me to neurological problems. I am not really going to mess with this stuff, or play guessing games. I was pretty sick before getting treatment, and now I feel like I have my life back - I am sticking to what works and makes me feel better. These diseases scare me. The treatment options aren't perfect, but they are all I have.

I think of the diseases as a sleeping dragon - the drugs (and a healthy diet with no gluten or dairy, on the advice of my doctor) keep it asleep - I am NOT interested in waking it up. It IS hard to live with. But I try to look at all the great things in my life, and realize that every person has some burdens they carry - this sucks, but it's okay...there are far worse things. I try not to obsess. I learn a lot on how to stay healthy, and I live each day and am grateful. If I am going to get horribly ill in the future, I don't want to look back at this time, when I felt relatively well, and wonder why I spent it worrying and obsessing instead of ENJOYING the health I HAVE.

I love the saying "don't go looking for unhappiness - it will find you soon enough". To me, that means to be happy when you can - you can't hold off the bad stuff by worrying about it - just live the best you can. That wisdom has helped me a lot in living with this diagnosis.

I hope some of that helps you...

Corella
12-21-2012, 03:34 AM
Well I successfully if not nervously, gave myself my injection for the first time with nurse watching, my hands were shaking but it was easier than I imagined.

My periods have stopped - Rheumy said 10mgs is not a high enough dose to affect periods (usually) and thinks the disease is active but said it is more Lupus you lose your hair and has mentioned lupus before. I have started the folic acid this week so hoping that may help.

I do have a feeling that I am quite sick and I agree with you that the disease is far worse than the medication in so many cases so i shall put on my big girl pants and see what I can do to counteract unpleasant stuff. I am patting myself on the back for doing my first injection as well.

My GP is running a test for menopause and in a way I am hoping that it is as menopause is a normal stage of life, periods stopping for no reason at all when you have an AI disease is not, I get the results xmas eve.

I dont want to be totally bald, and am hoping that I dont go that way, if I start to go totally bald then I will have to stop the MTX as it isnt as though I would be critical without it but I shall weigh up the options and discuss it with my Rheumy. One nurse told me sjogrens is a mild inconvenience of dryness, which annoyed me - as it is so much more than that.

Does folic acid help with the hair - do anyone of you know?

SleepyInSeattle
12-21-2012, 08:26 AM
My doc said that yes, the folic acid should help with the hair.

Corella
12-27-2012, 02:38 AM
I vacuumed up a load of my hair yesterday and it upset me immensely. It probably looks more than it actually is and it is hard not to obsess about it.

Still no sign of my periods - menopause test is negative, even for peri - menopause so GP reckons it could be the Sjogrens that may have affected it.

I have bloody horrible pains in my feet, last night it all got too much for me and I burst into tears - well not tears as such as I cant produce those so I look like a bit of a faker but you know what I mean.

I feel like putting a 'wanted' poster around my town saying if anyone finds my missing periods could they please return them ASAP, it is the only thing my body knows how to do normally and I miss curling up on the sofa snuggled up with some panadol and a bar of chocolate.

I will never moan about the normal facts of life again - Sjogrens has robbed those from me, in fact if my illness were a person, I would have slapped it by now and kicked its ankles.

Do any of you get dizzy and have heart palpitations when you go out in the sun?

Shine
12-27-2012, 05:30 PM
I'm always dubious about this whole "your medication shouldn't be causing those side effects a such a low dose" thing. Yes, it shouldn't, but I was told that about an anti-psychotic I was taking that made me produce and leak breast milk. And no I was not psychotic! :) That particular side effect usually starts in men over the age of 50 after taking high doses of over prolonged periods of time. I was a 22 year old woman taking the tiniest dose ever (0.1mg) for 3 days.
I tend to have unusual side effects on small doses of medications...I have learnt this from many experiences like the one above. In the same token I also seem to get benefits of medication on lower doses.
So when some says it shouldn't be happening or it shouldn't be caused by your med at this dose...just weigh up the evidence...when you started taking the meds, when the symptom appeared etc.

It's very important to weigh up the pros and cons of each med though. What are the alternative meds available? Will they have the same positive effect on your sjogrens as mtx? Is it worth the hair loss? Do the positives outweigh the negatives? It's such a good idea to talk it over with other people on here. Don't make any decisions without consulting your doc though which I know can be awkward when they don't believe that something is caused by a med.

Xx

Corella
12-27-2012, 07:24 PM
Very true, I have had nurses tell me that you have to be on preds years to get bad side effects which of course is rubbish, two days on 10mg and I get mood swings, insomnia the whole works.

I think it is a mixture of both with hair loss - the disease activity and the medication as my hair was falling out long before I started the MTX, in fact my hair is better now but still falling out but in better condition.

I shall stick with the MTX as I have saliva although this hot weather we are having is crucifying my joints and I wake up so stiff in the mornings I can barely move but there is deffo an improvement on the MTX and as for reducing the steroids, I forgot one day to take my 5mgs and 10 hours or so later, my joints were swollen.

Oh well, I think I can cope with a bit more hair loss rather than the pain of my disease. I am holed up in my house today as it is 40 degrees outside and this weather is so bad for me.

And it is MTX injection day, cheers to all of us that do our jabs today - I cant raise a glass of wine to you, I shall raise my syringe instead. (a girl has to keep her sense of humour!)